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Purpose: To explore the rehabilitation experiences of young adults with disabilities, and identify key factors for their successful transition and integration into home and everyday life. Material and methods: A prospective qualitative longitudinal study with two semistructured individual interviews was conducted. The study included young adults with physical disabilities who were able to communicate verbally. The participants underwent two inpatient rehabilitation stays, including daily schedules of 3-5 h of physical, social, and life skill activities six days a week. An individualized goal-oriented plan was employed during their subsequent at-home period, with digital follow-up and collaboration with local service providers as support. All interviews were transcribed and underwent inductive content analysis. Results: Fifteen young adults (17-29 years old, ten women) participated. Three main themes emerged: expectations, experiences and challenges during and after the inpatient rehabilitation stay, and important factors for successful transfer to home life. The results demonstrated improvements in the participants' physical, self-management and social skills, but also challenges in transferring them to everyday life. Conclusions: A coordinated support system involving family, volunteers, specialist health care and local service providers is essential for fostering a healthy lifestyle and participation for young adults with disabilities in various life arenas.

Background

Participation (attendance and engagement) is important for children's development and well-being. The aim was to study the relationships between attendance, engagement and independence in everyday activities of children with intellectual and other developmental disabilities and to compare patterns between children with and without comprehension difficulties.

Method

Participation and independence (FUNDES-Child-SE) were measured in 131 Swedish participants (aged 5-18 years). The analysis included Mann-Whitney U and Spearman's rank correlation tests.

Results The group without comprehension difficulties attended with a frequency more similar to typically developing peers, with higher engagement and independence. There were very strong overall attendance-engagement correlations (r = 0.91 for the group with comprehension difficulties and r = 0.87 for the group without) and attendance-independence correlations (r = 0.86 and r = 0.87), as well as a strong correlation between engagement and independence (r = 0.78 and r = 0.77).

Conclusion

Despite strong overall correlations between dimensions, differences across specific activity items underscore the need for targeted assessment and intervention.

BackgroundEnsuring inclusive participation in daily physical activities is crucial and valid and reliable instruments are needed.AimTo evaluate the test-retest reliability and internal consistency of the self-reported web-based physical participation instrument, ActiveYou II.Material and MethodsReliability was examined in 41 children (mean age 10,5 years), and 41 adults (mean age 49 years) with disabilities using intraclass correlation coefficients (ICC), Kappa statistics, percentage of absolute agreement, and Cronbach's alpha.ResultsThe test-retest reliability was good for the participation frequency scores (ICC; 0.66 to 0.95) and moderate for the skill-competency and involvement scores (ICC; 0.43 to 0.89). The alpha values for internal consistency were acceptable for the frequency (alpha = 0.749), skill competency (alpha = 0.833), and involvement scores (alpha = 0.795).ConclusionsActiveYou II demonstrated good psychometric properties, indicating its potential to inform intervention planning and enhance service provision for individuals with disabilities. Lower reliability in skill competency and involvement scores suggests these factors are transient, varying with experiences, well-being, and mood. ActiveYou II maps and evaluates the interaction between individual and environmental factors, enhancing understanding of participation in physical activities.SignificantLeveraging insights from ActiveYou II, stakeholders can enhance participation in physical activities and well-being for individuals with disabilities, thereby fostering a more inclusive society.

Background: Disabilities can hinder children’s and youths’ participation (frequency of attendance and engagement) and independence in everyday life. Aims: To identify factors that predict levels of participation and independence in everyday activities in Swedish children and youths with disabilities. Material and methods: This cross-sectional study, including 131 participants, utilised instruments about child and environmental factors. LASSO regression analyses were conducted to identify predictors of participation and independence. Results: An item screening for comprehension difficulties was the strongest predictor of attendance, engagement, and independence in daily activities. Other influential child factors included the presence of seizures, speech abilities, age, pain levels, and motor functions. None of the studied environmental factors were retained as predictors in the models. Conclusions: Difficulties in intellectual functioning need to be evaluated and considered in planning interventions to improve participation and independence. Likewise, multifaceted nature of challenges found in this study underscores the need for diversity of interventions tailored for individual needs. Significance: The result underscores the critical role of comprehension and intellectual functioning in predicting and enhancing participation and independence in children and youths with disabilities, advocating for comprehensive assessments and sustained support.

Background: FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity. Methods: Caregivers of 163 children with disabilities aged 6–18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components. Results: The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data. Conclusions: Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

Purpose: Explore how youths with CP experience participation in everyday life, their experience of having participated in a periodical intensive rehabilitation programme and their expectations for the future. Materials & methods: A qualitative design that included semi-structured interviews with 14 youths with CP (mean age 17 years). Results: The qualitative content analysis exposed six themes, (1) Everyday life–to get the pieces of your life to fit together, (2) Participation means inclusion and belonging–the meaning of life, (3) Individual and environmental factors influencing participation, (4) Experience of physical and social activities away from home together with like-minded people, (5) To be continued locally, and (6) You do not know the future, anything can happen–visions for the future. Conclusions: Participation in everyday life increases the meaning of life but takes energy. Periodical intensive rehabilitation programme enabled youths to try new activities, make friends and increase self-insight in their own strengths and limitations.IMPLICATIONS FOR REHABILITATION Young people with cerebral palsy (CP) describe participation as the meaning of life and state that it is essential for inclusion and being able to contribute to society Adaptation of environmental factors including collaboration across service sectors and capacity building in young people within their preferred life situations appear to be essential A periodical intensive rehabilitation, including adapted physical activities in groups, is recommended to provide peer learning and mastery experiences in young people with CP. Young people with CP seem to have the same hopes for the future as their typically developing peers.

Background: There is a need for an instrument to measure participation and independence in children with disabilities. FUNDES-Child-SE has its origin in the participation questionnaire Child and Adolescent Scale of Participation. Aims: Test the psychometric properties of internal consistency and test-retest reliability. Material and methods: This cross-sectional study included caregivers of 163 children with disability aged 6–18 years, 59 of whom were also included in the test-retest study. Descriptive statistics were used to evaluate the proportions of valid ratings. Internal consistency and test-retest reliability were tested through Cronbach’s alpha and the intra-class correlation coefficient. Results: The amount of not relevant/not applicable ratings was substantial but varied between items and subdomains. Internal consistency was acceptable (0.8–0.95), and the test-retest was marginal to excellent (0.73–0.95). Conclusions: The reliability together with the content validity support the use of the FUNDES-Child-SE to measure participation and independence in children with disabilities. However, results should be interpreted with caution due to the small sample size and possible selection bias. Modifications to reduce the not relevant/not applicable responses should be investigated together with the instrument’s responsiveness. Significance: FUNDES-Child-SE can be used to facilitate a discussion of participation and independence and to plan interventions in a habilitation setting. 

Purpose: The aim was to culturally validate a questionnaire about children's/youth's participation to be used in a Swedish context. Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed. Results: The interviews provided support for the questionnaire's relevance by being a tool to assess important aspects of participation, to gain insights into one's own/the child's participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children's participation.

Background The conceptualisation of participation is an ongoing discussion with importance for measurement purposes. The aim of this study was to explore the two subjective subdimensions of participation, involvement and engagement. The purpose was related to measure development within the field of paediatric rehabilitation. Methods In a scoping review, following the PRISMA-ScR, the databases MEDLINE, PubMed, Academic Research Complete, PsychINFO, and Business Source Complete were searched for publications that described engagement and/or involvement constructs. Results Thirty-nine publications met the inclusion criteria. Involvement could be conceptualised as an unobservable state of motivation, arousal, or interest towards a specific activity or product. Building a consensus over different fields of research, engagement can be seen as the individual's behavioural, cognitive and affective investment during role performance. Conclusions This scoping review points in a direction that the two subdimensions of participation need to be separated, with involvement being a more stable internal state of interest towards an activity, and engagement referring to the specific behaviour, emotions, and thoughts meanwhile participating in a specific setting. Clear definition of concepts will enhance the development of measures to evaluate rehabilitation interventions in the field of occupational therapy and related fields.